Yvonne T
Posted by

New CLL patient

Yvonne T
Posted by
16 Jul 2014

Coming to terms with being diagnosed with CLL.

This is the first blog I have ever written but I was tempted to do it by reading another on this site after I had been diagnosed.

My journey, or minefield, started in January when I was due to have a knee arthroscopy. I was being an organised, retired ex- teacher( some would say control freak) and getting all the shopping done ready for post op meals. While I was out my GP surgery had called to say I must visit ASAP. My lovely husband passed on the message without Imparting any fear. All this was soon about to change!

I was seen almost immediately- I should have known that something was wrong- by a locus. The conversation went along the lines "your operation is cancelled, they found something wrong with your blood, it is a type of cancer called non- Hodgkin's lymphoma. You will be seen within a fortnight, sorry to tell you this on a Friday I expect you will be quite worried. come and see me on Monday when you have thought of any questions" It was a good job I only had to walk a short distance to get home. 

The worst part was not the diagnosis but having to keep smiling whilst everyone asked me why I hadn't had my knee operation. "Yes I am fine just a problem with a blood test".

Of course the appointment at the hospital was for the end of the two weeks. My husband and I went with great trepidation after many nights of drinking tea at 2 in the morning. The whole experience made us feel a lot better. All the staff at the oncology dept were lovely, my haematolgist is very nice and down to earth and tells it how it is. Fortunately my husband had done a lot of 'googling' so had all the questions to ask- I had decided I wouldn't look anything up until I had been to the hospital.

Giving blood has always been difficult for me, many nurses and doctors have given up trying. I often have 3or4 bruises after so many attempts. Sods Law I got a blood cancer!

I was booked for CT scan and bone marrow aspirate and trephine. I did say to the consultant that taking bone marrow sounded painful so she suggested 'with Entonox'' . CT a nightmare - took half an hour to get a cannula in and 3 mins for the scan.This time a bruise from wrist to elbow. Bone marrow a breeze with entonox- I am basically a coward.

Another oncology visit and watch and wait is the treatment. What an odd thing this is and how it messes with your emotions. Great no treatment. I've got cancer and they don't do anything! At first I only told close family and friends but even then some of them didn't or couldn't get their head round it. If there was no treatment it must have 'just been a scare'  or 'you look too well to have cancer'.

I got the final diagnosis of CLL just before my birthday in June and am on 3 monthly checks. I don't know if knowing what the symptoms might be is helpful. Am I just tired from long walks with the dog and gardening or is it the disease?

My husband and I deal with it with a lot of black humour and making fun of it. I didn't. Think that I would worry before a check up but I did have a sleepless night! My next task is to make sure I understand what all the numbers for all the blood results mean for me.

Can anyone tell me why , if I am not having any treatment, my travel insurance is now so expensive?

Sorry it was a ramble.

Comments

Anonymous
17.07.2014

I wanted to take my son to Tenerife after his last lot of radiation. All on line insurances wanted to charge me above 600 pounds so I went to the elf unit in oncology who gave me a list of insurers to work through. I got a good deal at less than 150 pounds. Still e pensive but not as bad a some. Ask advice in oncology.

Anonymous
19.07.2014

I have found an Insurance company who will cover me with ALL. About £200 for a week. I was taken ill in France and admitted to hospital, the Insurance compny were brilliant in communicating with the hospital and my husband.

Anonymous
23.07.2014

My husband has insurance with our bank which covers for everything except the lymphoma. Got recommended a company called MIA as they will make up the additional cover and not too expensive. Also found out that we would both need the extra insurance because I'm not covered if travelling as I know my husband has had cancer! Nightmare!

29.09.2014

Yvonne,

Thank you so much for being brave enough to share your diagnosis with CLL with us. I cannot believe that the GP was so matter of fact and blunt with you and am so, so thankful that you have a loving and supporting family behind you and that your experiences with the haematology team and your consultant have been more positive.

Clearly this isn't satisfactory and worryingly is an area of disastisfaction for a number of patients who took part in our recent patient survey. The patient survey also revealed that 'Watch and wait' is an area of real patient need and we are certainly going to be trying to do something to help address this area of need. The uncertainty around not knowing when or if you'll go on to need treatment must be incredibly unsettling and more support needs to be offered to patients on watch and wait.

The important thing is that you're not alone and we're slowly building up a number of people on watch and wait who are blogging openly about their experiences in a bid to come to sense with what's going on, express their emotions and help others in similar positions. You mentioned that you were encouraged to write this blog when you saw a blog written by another who was on watch and wait. If you haven't read her blog already, I'd strongly recommend that you get in touch with Kate Giles. Here's a link to her profile:

https://leukaemialymphomaresearch.org.uk/people/kate-giles

I hope you're now feeling a little bit more comfortable with your situation and wish you all the best in the future. If there is anything we can do to help, please don't hesitate to get in touch.

Andy

Anonymous
13.12.2014

Dear Yvonne Trowl It certainly was not a ramble -pure honesty and it is total transparency of feelings/emotions and honest concerns. My partner has been diagnosed and she has consistent swellings of both legs-feet and pelvic area of belly.

She initially had an infected lymph gland in left armpit and was put on anti biotics -and had to have a small operation (as she was frightned about a biopsy) and it proved non malignant. _7 months down the line both legs still swollen and another infected gland under same arm pit- requiring-more anti biotics.
She struggles with breath and from readiong internet websites like this -night sweats are a symptom.I lie many others are baffled what the causes are-nad her breathing was effected several months ago when using aspray to rid our rear kitvchen of mould and the spray ingredient causes her breathing problems then. -It really is a baffling disease -though i was informed that Hodkinson's lyphomia has two main strands -one non Hodgkinson was non cancerous and Hodgkinson Lymphomia was cancerous. But on this web site I ahve read all Hodgkinsons are cancerous -I am confused now -must double -triple check for clariity.